LUPUS UK

Got a diagnosis - mixed feelings

Hi guys,

I'm 21 and I've recently been diagnosed with mixed connective tissue disorder after a 'lupus like flare' for the first two weeks of December and a string of positive blood tests after having my Raynauds checked earlier in the year.

On one hand, I left the hospital very relieved to have a diagnosis and prescription after 9 months of uncertainty and only 2 weeks of really bad symptoms. I was also assured that so far, the disease has not affected my body in any significant way, and hopefully with the hydroxy, I can carry on living my normal life with only monitoring.

All excellent news and I've been over the moon to hear it.

However, as the relief passes, the reality sets in that this is a chronic condition that won't disappear after a bit of hydroxy.

I'm trying to stay positive and I have good reason to, but there's still a worrying thought that this might worsen, even though it's a case of if "I'll cross that bridge when I get to it".

How did you guys feel when you got your diagnosis(es)?

Finally, Merry Christmas to everyone, wishing you a lovely time.

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Hi AmyJ3,

I hope that you find the hydroxychloroquine helps to alleviate your symptoms. It can take a while before it takes effect (around 3-6 months) so it does require some patience unfortunately.

You may find the information towards the end of our blog article here helpful - lupusuk.org.uk/getting-diag... It is aimed at people who are going through the process of getting a diagnosis and those recently diagnosed.

I'm glad that you are a part of this community and I'm sure you'll get loads of helpful and supportive comments from other members.

If you live anywhere near London, we have a support group for young people (16-26) with lupus and also have some people with MCTD and UCTD who come along. You can find out more about the meetings at lupusuk.org.uk/lupus-in-you...

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Thank you for all the info, Paul.

Thankfully the flare seems to have nearly resolved itself before I was placed on hydroxy so it's more of a prevention aid than helping aid and that's another thing my rheumy said to be positive about.

I'm really glad I found this community, everyone's been super helpful and nice.

I unfortunately do not live near London but do have a friend or two down there so I will consider popping down sometime and seeing if I can stay with them.

Merry Christmas!

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Hi AmyJ3,

I'm glad to hear that you are managing well at the moment. Hopefully the hydroxy will help to keep it that way!

If you do ever fancy visiting a friend to then come along to one of the meetings you would be very welcome. We try to announce the meeting dates six months in advance so that people have time to make plans. The dates for the first half of 2018 can be found at the link I shared.

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Hello AmyJ

Good to hear that you seem to have got a clear outcome from your rheumy assessment; uncertainty and prevarication when you are feeling unwell is really hard to deal with.

I had a rather abrupt onset of severe symptoms and an initial diagnosis of heart failure, which I must say was really quite alarming. When this was revised to some sort of systemic auto-immune disorder I felt the same kind of relief that you describe because it seemed to give me a clear plan for treatment and even recovery. Tbh, although I flinched when I heard that I might have to be on medication for ever, that concern was trivial compared to the horrible symptoms that I had - I would have taken anything!

One thing that this disease has brought is a deep understanding that one never knows what is around the corner - whether you have a diagnosed condition or not. Seize the moment - and have a great 2018! X

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Thank you for all your help, Whisper.

I imagine your initial diagnosis was very alarming, have things since improved?

Taking medication for ever was a bit of a surprise to me too, especially as I've only ever been given nifedipine for my Raynauds and it became more of a 'take it as needed' over 3 times a day.

I will definitely try and keep a level head and try to understand I can't predict the future. I've got a good 2018 planned and am looking forward to going back to my studies after the two week break.

Wishing you a lovely Christmas and great start 2018! X

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Thanks Amy, My first symptom was extreme shortness of breath - due, as it turned out, to inflammation and scarring of my lungs caused by my immune system deciding it didn't like them any more (maybe they had said something when drunk, maybe they had disagreed over the true significance of Freud's abandonment of the seduction theory, I don't know). Anyway, the hydroxy and pred dealt with that like a dream. I've since discovered that wasn't the end of the matter, but hey ho! Life goes on, generally speaking. Keep us posted with your progress and insights x

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Gosh, bit of a nightmare, whisper!

Glad to hear the hydroxy and pred helped, even if it wasn't the end of the story.

I'll make sure to keep everyone updated, but it's a relaxed Christmas for me so I doubt I'll have too much to update. Take care x

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This was my experience - an abrupt diagnosis brought on by an abrupt onset of symptoms. I was grateful for knowing nearly immediately what was wrong, but it also made the emotional parts of the diagnosis difficult. I had no time to "get used" to the idea that I would be sick forever. It had seemed one day I was fine, the next I found out I had an incurable disease.

I was beside myself for about a year. So much confusion and sorrow and anger. It was a genuine grieving process. I gave myself permission to feel whatever I felt - and boy, there was a lot to feel.

People here told me (this was my first stop after I was diagnosed) that the first year is the hardest. I wasn't sure I believed them - but they were right. A year later and my symptoms have greatly improved, but moreover, I've come to a real acceptance about forever having this disease.

It's so easy to think of the things that we lose with lupus. Jobs, hobbies, friends, our sense of identity, trust in our bodies. And it's important to take the time to grapple with all of that. Eventually, though, you really do find a "new normal", and you will probably find it's not anywhere near as bleak as you originally thought.

(I haaaated that phrase in the beginning. "A new normal." That phrase made me SO MAD, but in the end....it was exactly the right phrase.)

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The acceptance is a difficult part, and especially when I'm surrounded by pity and worry by my family which is natural, but makes me concerned about whether i should be more worried, because I'm using every positive statement by my rheumy to assure myself it'll be fine.

I'm fortunate that my family history means I have relatives with autoimmune conditions and they've been supportive but have given me cautionary advice.

A new normal is something I'll have to adjust to, as I am quite used to having my cake and eating it too regarding balancing studies, social life hobbies, and home life. My friends had recently been stating I'd been going overboard, so hopefully they'll understand when I tone down my hobby and social time.

I'm sure it'll be better than I think and once my family adjust to the news they'll think so too.

Thank you for the advice. :)

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Hope the hydroxy helps there’s up and there are downs but this site is excellent and helpful ,when I’m havin a tough time I rant and vent on here it helps no end as people on the site know how you feal and will help and make you laugh at times all the best

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Hi there I was diagnosed at 18, 24 now! It came as a shock to me and I haven’t even heard the disease before!

But I can say I have had my ups and downs but I have been ok. Having a positive mind set and a supportive family and health team behind you is very important.

Don’t worry or stress about it please it’s hard not to but honestly take every day as it comes and make the most of each day!

Feel better soon 💕 xx

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Hi AmyJ3,

I do hope you had a good Christmas considering the stressful December you had with tests and all. I was initially diagnosed with coeliac disease at 32 and was relieved I could eat gluten free and repair my gut with no medication.

However a year later I felt very unwell again and it took 15months to get a diagnosis of MCTD and be put on hydroxychloroquine. It took 4-6 months to kick in as I had severe burning joint pain all over. I've been on it almost 5 years now and have learnt to slow down. It's for the best, I reduced my working hours to a 4 day week as I was becoming so fatigued, and just learnt to say no sometimes when I couldn't keep up with pals or go out.

Accepting is hard but hopefully you will have a great rheumatologist that listens to you and like me you will have yearly appointment checkups to make sure you keep well. (Which I just had today actually)

It's hard for friends and work colleagues to understand when you are fatigued, but from the outside you look fine ...(check out the spoon theory online )

All the best!

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Hi Bella,

My Christmas and New Year has been lovely, and my flare has mostly resolved.

I've still got a faint few red/purple patches from the rash I got, but that's on my legs and summer is a very long way away so hopefully the hydroxy will have kicked in by then!

Work does concern me a little, because I'm still studying and my ideal career is said to be stressful.

I've just checked out the spoon theory - it's a really good way to explain everything to my friends. :) x

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